Authors: David Ross Patient and Neil Orr, January 4 2014 Prevention with Positives (PWP) has been the buzz term for quite some time in HIV prevention strategies. The concept is simple: Identify those living with HIV, and focus prevention efforts upon these people. After all, if you can get people who live with HIV to implement prevention methods, you have addressed the core route of HIV transmission. Sounds simple and cost-effective, doesn’t it? Not quite...
The PWP approach seems logical. However, upon closer examination, some of its main premises have serious flaws. The first problem lies in the accurate identification of those living with HIV, and who is causing the bulk of HIV transmission, and why. In a developing world context, the overwhelming method of testing people to see if they have HIV is the Rapid (finger-prick) Test. Nothing wrong with this test: When used correctly, it accurately identifies people who have antibodies to HIV. The question is whether these people are responsible for the majority of HIV transmission. The answer is no, not necessarily. However, before we explain why this is a problem, it is necessary to explain how transmission of HIV actually happens.
Biologically, transmission of HIV depends upon the viral load - the quantity of HIV in sexual fluids, breast milk, and blood - at the moment of exposure, not merely whether the person has HIV antibodies or not. There is now strong and clear research evidence (such as studies on transmission rates for sero-discordant couples where the partner who lives with HIV is taking antiretrovirals) that if a person has a very low or undetectable viral load, they have a very low chance of infecting their partner, even although they are still HIV-positive. In other words, antiretrovirals - if the person is adhering to the treatment - is an excellent prevention method, far more effective than, for example, condoms. The same mechanism applies to HIV-positive mothers who are breast-feeding their infants, who are on ART (antiretroviral treatment).
The bottom-line is that the higher the viral load, the higher the probability of transmission, and the lower the viral load, the lower the probability of transmission. The fly in the ointment is that the highest viral load is found in people testing HIV-negative, in the Window Period. There have been a number of studies indicating that, even although this period is quite short - an average of three weeks, up to three months at the most - the viral load is extremely high. Several studies in Africa have indicated that anywhere from 40% to 50% (possibly more) of all new HIV infections are caused by people in this Window Period. In other words, more-or-less half of all new infections are caused by people who test HIV-negative using the standard Rapid Test. They don’t know their actual status, and so are not included in PWP interventions. Yes, there are tests that can pick this up, such as a viral load test or PCR test. These tests will tell you that the person has HIV, even although they test HIV-antibody negative.
Why aren’t these tests being used to identify people in the Window Period? Two reasons: Cost (the tests are expensive) and ignorance. Most people don’t realize the impact of this phenomenon, in terms of transmission. Essentially, PWP starts and ends with a diagnosis of HIV-Positive, so it misses half of the target group, namely people living with HIV and who can transmit HIV.
People argue that post-test counseling includes information about refraining from unprotected sex if the person tests HIV-negative. Really? How much time - compared to a person testing HIV-positive - is spent on this? What is the general attitude of counselors when a person tests negative? The tragic part of all this is that about 70% of people in the Window Period get specific symptoms - Acute Retroviral Syndrome (ARS), alternatively called Primary HIV Infection (PHI) - and most go to clinics and hospitals for treatment. Are nurses and doctors even looking for this syndrome? Nope - there is currently no screening protocol for ARS in most medical facilities in the developing world. If we consider how much time and money is spent on persuading people to come forward to get tested for HIV, and then consider that most people with exceptionally high viral loads in the Window Period actually make an effort to get to a clinic or hospital, the enormity of this gap in the system should be pretty obvious.
So that’s the first serious flaw of current PWP programs: They can, at most, only identify about half of the target group. However, to be realistic, this can be fixed, with education, training, and allocation of resources.
The second problem with current PWP programs - and a more serious one in the long-term, in our view - is the insistence of program designers (and funders) that you can somehow effectively (and exclusively) focus your prevention efforts on the individual living with HIV, and ignore or work around their partners, family, and their social environment. Yes, we are talking about stigma, but there’s much more to this issue: It is about the context in which the person living with HIV lives - their friends, family, religion, traditions, employment, food, water, transport, needing to belong, feelings of efficacy, gender roles, goals and desires, to name just a few factors.
The entire field of stigma is a muddy mess: Show me an anti-stigma program that works consistently and reliably across a range of settings, age and gender groups, across various religious, cultural and economic settings, and I’ll show you the unicorn I have in my back yard. Yet, no matter where you go and who you ask, the fear of stigma is stated as one of (not only) the main causes for people to not get tested, not adhere to treatment, not seek treatment, not disclose their status, not attend support groups, and so on.
When you ask people what they mean by stigma, it boils down to the fear of being viewed differently (attitudes) or treated differently (actively discriminated against) in a negative sense, by people they know, interact with, or seek acceptance from. Here’s the kicker: Our (PWP) response is to tell people living with HIV that they – and they alone – need to separately congregate as a special group (with great secrecy, called confidentiality) and learn a whole bunch of new (different) behaviors such as nutrition for people living with HIV, treatment literacy, how to take measures to protect partners, babies and other people, all of which will make them appear and act differently to everyone else. Then we expect them to go home and display these different behaviors. Do you see the problem? It is ironic that, for example, when clinics set up special systems to make sure that people living with HIV access care and support in a more efficient manner (e.g., special waiting areas, files with special stickers), the first thing you hear are the complaints about being treated differently, at which point the health-care manager throws his or her hands up in the air in despair!
Please don’t conclude that we think that we should not make efforts to address the specific needs of people living with HIV. Not at all: It would as illogical to insist that a person living with HIV should wait in the general waiting area of a health care facility with other people with active infections (such as TB [tuberculosis]), as it would be to insist that a person with chronic arthritis participate in a soccer match, or to insist that a person with diabetes eats an entire chocolate cake on their birthday. Instead, what we are pointing out is that there is a difference between what people with specific health conditions need (whether they are aware of it or not), and what they want and aspire to. As the phenomenon of stigma shows, what people want (including emotional needs such as belonging and acceptance) can very often be stronger than what we think they really need. Many people are truly more afraid of being alone and isolated than they are afraid of illness and death.
So, you ask, how can we prove that this is the case? Glad you asked …
Back in November of 2009 we took an old concept - Post Test Clubs (PTCs) - which we borrowed from an east African model (Uganda, early 1990’s). The original Post Test Club format was strictly an advocacy program where a group of people who had been tested for HIV shared their experiences of having been tested for HIV, whether the outcomes was positive or negative. The purpose of the original PTC process was simply to encourage others to come forward and get tested. Other subsequent versions of PTC included income-generation projects.
We liked the basic idea - to encourage people to get tested - but we felt it was fairly limited in scope and appeal to communities, for the simple reason that it did not really address the underlying motivation to get tested strongly enough, especially for people who did not perceive themselves at risk. Also, it did not address the question of what to do after the HIV test.
We had what we considered to be a novel idea, that (a) maybe people did not think HIV was as important as we think it is, and (b) maybe we can find out what they think is important, and connect HIV to that. If this was the case, then we thought we would be able to attract a lot more people into the process.
So we set about modifying the PTC concept to meet the needs of our target population, deep rural communities that had been identified by the provincial Department of Health as being ‘hot spots’, which are areas grossly under-resourced and with poor access to basic services such as piped water, regular food supplies, employment opportunities, and adequate healthcare facilities and personnel. Our pilot PTC program took place first in the North West Province and then Southern Free State, and included small towns, villages, informal settlements, semi-formal settlements, farming areas, and land claim settlements.
We first met with groups and individual in our target communities - church groups, schools, youth groups, home-based care workers, amongst others - and asked them to tell us what their community’s primary challenges were, in order of priority. We then merged these lists of priorities, and set about designing self-help interventions to address each of these needs. Issues at the top of the list included food and water (food security, nutrition for health, cleaning unsafe water), employment and managing money, motivation and the future (including education), substance abuse (especially alcohol), and interpersonal relationships (communication, gender roles, domestic violence). Other issues included general health (colds, flu, headaches, diarrhea, constipation, diabetes, high blood pressure, exercise) and pregnancy. Incidentally, HIV/AIDS and TB ranked about number five to seven (depending upon the group) on the stated needs list.
We then embedded - directly or indirectly - HIV prevention and treatment information and methods, such as indicating which foods were of special importance to people living with HIV and TB within the context of a balanced diet, or explaining HIV transmission within the context of general germ theory, the terminology of medical treatment, how the immune system works, and lifestyle diseases such diabetes and hypertension.
The only criteria for joining the PTC was to provide written evidence (from a health center) that the person had been tested for HIV, diabetes (glucose test) and had their blood pressure checked. Results were not asked for or discussed. No-one was paid to attend or deliver the sessions. There were no material incentives (apart from vegetable seeds). The only incentive was to learn how to deal with specific issues, have this learning assessed, and then have a Member Card signed. If the person assessed was competent, they were permitted to teach-forward that session. Dissemination of information and skills was primarily within intimate networks: Friends taught friends and family, and family taught family and neighbors. In a very short space of time (11 months), 34,093 activities and sessions were delivered within a community of 135,000 people, starting with 75 volunteer facilitators. Of these activities, 16,544 were HIV-related (prevention and treatment) and 2,068 people tested for HIV, without much effort. This was achieved with a total expenditure of $209,098. A very affordable intervention by any standard, when it is considered that the bulk of the costs involved travel costs for the program management team and trainers.
What we learned was that if we taught everyone the same information - regardless as to their HIV status – about things that they were really interested in, issues such as HIV-related stigma did not arise as a barrier. What we did not anticipate occurred about 6 months into the process, when people started to disclose their HIV status to their fellow club members. Without exception, there was not one negative response reported.
The PTC program was not perfect by any stretch of the imagination. There was certainly scope for addressing improved treatment service delivery to people living with HIV, for example. However, it did prove the point that when you address what people want (their stated priorities), you could simultaneously achieve what they needed from an HIV prevention perspective without encountering significant barriers such as stigma.
What happens when PWP is done without the larger community being involved? As a result of the outcomes of the PTC process, we were requested to do a PWP-focused support group process in the North-West Province. We insisted that this be done within a larger program of addressing community needs. Initially, it seemed fine: Facilitators were doing many community activities, along with their support groups. Recruitment of new support group members was excellent. Then we were instructed to reduce the community activities, and focus primarily upon the support groups. Recruitment of new support group members were reduced in half within one month, and never recovered. When facilitators were asked why this was, they reported that people living with HIV were comfortable attending sessions when there where parallel community activities occurring, as the community did not associate the program with HIV support groups. When community activities were reduced, it became pretty obvious to the community that program sessions were being attended only by HIV-positive individuals. In other words, stigma reared its head, as predicted. It wasn’t that existing members disappeared: Attendance was exceptionally high (more than 85% for all 17 sessions). In our view, those people who had started the process rapidly became aware of the benefits, and persisted despite obstacles. Instead, the problem concerned recruiting new members. Even when door-to-door recruitment was increased by more than 400%, this did not resolve the problem: The perception of the program had been changed from being a Wellness program to an HIV (PWP) program, and fear of stigma closed the doors for many to attend.
Prevention with Positives, within this second research program, reached a total of 821 HIV-positive support group members (compared to the 2,068 HIV-tested and participating in the PTCs, with a district ANC prevalence of 26.1%, which is approximately 400 HIV-positive people) and a total of 9,142 community members (compared to 34,093 in PTCs), at more than three times the cost of PTCs over the same amount of time, and with a much larger population (1.57 million, versus 135,000). Do the math.
We are quite aware that the pre-versus-post intervention impact of the various processes upon the participants cannot be compared, although the content of the sessions and activities were very similar. In the second (PWP) process we had well trained and paid facilitators, while the PTC process was delivered by unpaid volunteers with less training, and far fewer material resources. That is not the point: The point is that PWP has significant challenges as a stand-alone process, but is far more accepted when presented as only one aspect of a larger and broader community Wellness program. And, as we discovered, calling a program Wellness (or anything similar) and then just dealing with HIV doesn’t fool anyone. People aren’t stupid, which is a blessing when you listen and respect what they want and think, and a curse when you don’t.